Alzheimer’s Association report reveals caregivers’ difficulties navigating health care system


DAYTON — The newly released Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figures report reveals both dementia caregivers and health care workers report difficulties in navigating dementia care within the U.S. health care system.

Nearly half (46%) of health care workers say their organizations do not have a clearly defined process for care coordination and clinical pathways for patients with mild cognitive impairment (MCI), Alzheimer’s disease or other dementia, said press release from the Alzheimer’s Association.

In addition, 60% of health care workers surveyed for the Alzheimer’s Association Facts and Figures special report, “Mapping a Better Future for Dementia Care Navigation,” believe the U.S. health care system is not effectively helping patients and their families navigate dementia care.

“Unfortunately, dementia care navigation programs and services are not widespread in Ohio, or across our country,” said Annemarie Barnett, executive director of the Alzheimer’s Association Greater Cincinnati and Miami Valley Chapters, in the release. “We hope this year’s report will be a catalyst for change. Studies show dementia care navigation programs can offer significant benefits to people living with dementia and their caregivers – improving health outcomes, reducing health care costs and lessening caregiver stress.”

Providing a comprehensive look into dementia care navigation, the results from the surveys reflect the experiences, challenges, awareness and perceptions of dementia caregivers and non-physician health care workers. Dementia care navigation provides clinical and nonclinical support to people living with dementia and their caregivers to overcome barriers that compromise care and health outcomes.

The report identifies three initial efforts that can be taken to advance dementia care navigation across health care systems.

1. Formalize dementia care navigator roles and build expertise in dementia care.

Provision of dementia care training, dedicating dementia care staff roles and resources are essential.

Efforts to build expertise in dementia care began in late 2022 when the Alzheimer’s Association in Ohio began recruiting assisted-living communities and nursing homes across the state to participate in a new research study aimed at facilitating the adoption and use of dementia care recommendations to enhance care for residents living with Alzheimer’s and other dementia in long-term care settings.

The community care coaching study in Ohio aims to improve dementia care in the state and is a part of the million-dollar Dementia Care Practice Recommendations Project, launched by the Alzheimer’s Association.

“The Alzheimer’s Association is excited to partner with assisted-living communities and nursing homes in Ohio to study the best ways we can ensure adoption and use of the Alzheimer’s Association Dementia Care Practice Recommendations (DCPR),” said Lorna Prophater, director, Psychosocial Research & Fund Management, Alzheimer’s Association, in the release.

“These recommendations were developed in consultation with leading dementia care experts and offer guidance to help nursing homes, assisted-living facilities and other long-term care and community care providers deliver optimal quality, person-centered care for those living with Alzheimer’s and other dementia,” she concluded.

2. Incentivize and reward care coordination in dementia care.

Health care workers in the survey say current reimbursement systems fail to incentivize dementia care and are one of the greatest barriers to dementia care navigation.

Alternative payment models to provide future care coordination for people diagnosed with dementia are needed. Health care workers strongly believe that alternative payment models are important in providing future care coordination for people diagnosed with dementia.

Without new payment models that reward care coordination, many providers are ill-equipped to provide robust dementia care navigation support and services.

This summer the Centers for Medicare & Medicaid Services (CMS) is launching an eight-year pilot program in dementia care management. The Guiding an Improved Dementia Experience (GUIDE) model will test an alternative payment model (APM) to incentivize health systems that provide dementia care navigation.

This new payment model will help enable smaller practices, rural practices and inner-city health centers that traditionally do not have the financial resources an opportunity to deliver dementia care navigation.

3. Leverage technology to create direct lines to dementia care navigators.

Dementia caregivers reported the most valuable service care navigation could offer would be a 24/7 helpline. The Alzheimer’s Association currently offers a 24/7 helpline that performs some navigation activities, such as assisting individuals with Alzheimer’s or other dementia and their caregivers with recommendations for finding qualified care providers, general information about legal, financial and care decisions, and referrals to local programs and services.

Ideally, 24/7 assistance can be connected directly with an individual’s health care team enabling around-the-clock support. Several companies are exploring on-demand virtual and app-based dementia care navigation. These digital platforms can be used to offer dementia caregivers and people living with dementia easier access to resources, appointment scheduling and direct communication with care navigators.

There are 236,000 Ohioans 65 and older living with Alzheimer’s disease, according to the Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figures. 4,947 Ohioans died from Alzheimer’s in 2021 (the most recent year for state-by-state data). A total of 414,000 Ohio caregivers provide 624 million hours of unpaid care each year valued at over $11.4 billion.

To learn more about Alzheimer’s or other dementia and to access free support and resources, visit or call the Miami Valley Chapter at 937-291-3332 or the 24/7 Helpline at 800-272-3900.

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